Government Relations and Advocacy

For more than a decade, the Lupus Foundation of America and its network of lupus advocates across the country have worked diligently to stimulate millions of dollars in federal and state funds for lupus research and education programs.

We must continue to make our voices heard and educate our elected officials about the impact of lupus on individuals and their families. The Foundation is committed to working with the United States Congress, federal government agencies and state legislatures and agencies to improve the lives of the more than 1.5 million Americans affected by lupus.

Together, our work can elevate lupus on the nation’s health care agenda. 

Our Advocacy Impact

We are the leader in stimulating new federal support for lupus research and education and raising awareness among policymakers. Our efforts have yielded groundbreaking results:

  • Securing nearly $75 million in federal funding for lupus research, professional training and education. 
  • Securing Congressional support to establish the Federal Working Group on Lupus at the National Institutes of Health to exchange information and better coordinate activities of all federal agencies with an interest in lupus.
  • Establishing the first-ever Congressional Lupus Caucus in the House of Representatives to urge support for lupus research and increase awareness of lupus among policymakers.
  • Securing nearly $44 million for the National Lupus Patient Registry Program at the Centers for Disease Control and Prevention (CDC) to determine the prevalence and incidence of lupus.
  • Inserting lupus into the Department of Defense’s Peer Reviewed Medical Research Program (PRMRP), which has generated $l7 million dollars for lupus research.
  • Wrote language and advocated for a lupus-specific research program within the Congressionally Directed Medical Research Programs (CDMRP) at the Department of Defense (DoD) that was included in the 2017 Department of Defense appropriations bill
  • Securing $2 million in Congressional appropriations for the U.S. Department of Health and Human Services Office on Women’s Health (OWH) to conduct the first-ever Ad Council public awareness campaign on lupus, which has generated more than $80 million in earned and donated media placements.
  • Founding and leading the Medicare Access for Patients Rx (MAPRx) a coalition of more than 53 national advocacy and health professional groups working together to ensure  people with chronic diseases and disabilities have access to affordable medications under Medicare Part D.
  • Securing more than $10 million for the Office of Minority Health for health provider education and training and clinical trial education.

Learn More and Get Involved

Access the Foundation's Legislative Action Center to email your members of Congress about legislation and policy important to people with lupus and their families. If you are not already, become a lupus aadvocate today!

Read about the issues we fight for on our federal legislative and policy agenda.

Our nation-wide network of lupus advocates have helped us achieve many legislative successes.

The Foundation hosts a biennial National Public Policy Summit on Lupus. Learn more about the 2017 summit.  We hope you can join us for our next Summit. 

To learn more about state and local advocacy initiatives, connect with your local chapter.